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Justnme3

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Hi all, I could use some thoughts on my situation.

I am a 30 year old female. In April 2015, I started some fertility treatments. I did an ovulation trigger shot, and 24 hours later I noticed weakness in my hands, arms, and legs. I did my first trigger the month before and had no issues. After the 2nd one (April), the weakness started and progressed pretty uncomfortably and badly. I felt like I could barely cut into my eggs. Walking was possible, but it seemed like my legs were dragging. It's a weakness that I have a hard time explaining to people. Over the course of probably 3-4 months, it persisted and was accompanied by twitching, both visible and not. Mostly in my legs, and sometimes my pinky toe would randomly do a little twitch dance. The twitching pretty much only happened when I would lay down to go to sleep (which is when the weakness would be even more unbearable). The symptoms were later joined by some pain and tingly feelings in my legs. There was one day I had a weird pain on top of my foot that brought me down to the ground. Just as quick as it came, it was gone.

Anyway, I stopped all fertility treatments and sought a neurologist. He didn't seem to be concerned about ALS. He did an MRI and EMG. Both came out normal. My primary care dr also ran a slew of tests. Vitamin D was normal as well as everything else. I've been taking Vit. D3 anyway as one of my fertility supplements. Dr. also ruled out Lymes.

For the past 3 months or so, I've been feeling 90% better. It's rarely been an issue, so I figured whatever happened (maybe something from the injection) finally worked its way out of my system. I still got the weakness sometimes at night when laying down, but overall I felt like myself again and got ALS out of my mind.

Two months ago I took hormones to start my fertility treatments again. I haven't done the injection yet (that will be in a few days). I felt some weakness a few days after taking the pills (letrozole), but it went away fairly soon. I took them again last week, and with the exception of one bad night (tons of twitching in my legs and discomfort & weakness in legs), I was good.

Yesterday I had to go under anesthesia for a small procedure (also fertility related). Since then, man oh man. It's like it was earlier this year. Today has been pretty rough. I had weakness in my legs and right hand & arm all day. It's so unbearable at times. All I wanted to do was sleep so I could avoid the discomfort, but laying down is when it's worse. I'm laying down now and found a decent position to where it's not toooo bad, but even while typing I keep feeling teeny tiny twitches (fasciculations?) in my legs.

So...am I losing my mind? Do I need to be worried? I mean, I already am, but should I tell my brain to calm the eff down? I couldn't find side effects that resemble what I am experiencing from the hormone medications. My fertility specialist isn't sure about it either and doesn't seem to think it's related. I just don't know what to do or think. Any advice is greatly appreciated.

I just wanted a baby, and instead I got these terrible, scary symptoms. Ugh!
 

Nikki J

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It does not sound like ALS. Apparently the neurologist did not think it sounded like ALS. You had a normal EMG. You got better which does not sound like ALS. You speak of weakness in your arm and legs which is not how ALS starts. It starts as clinical not perceived weakness in one area. Twitches are meaningless as they are so common.

What is wrong? That is going to be for your doctors to work out. Since the timing relates to hormone therapy perhaps see an endocrinologist? A reproductive endocrinologist if you can find one.
I am sorry you have fertility issues. That is hard but don't add to it stress about an illness your neurologist ruled out and with which your symptoms are incompatible.
Good luck
 
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Green Queen

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Sorry I think Nikki may have a typo in there...your Neuro isn't concerned with ALS either.

My husband and I struggled with conceiving after our first child. It's a very scary, tiring and emotional process.
Hopefully it is just the treatment your body is reacting in some way to.

You had a clean EMG. That's excellent news.

I'm sure your doctors will come up with an answer. Trust in them.

All the best with everything.

God bless, Janelle x
 

Justnme3

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Thank you Nikki! The neurologist didn't think it was ALS, but I was very adamant about checking what we could. I think he did the EMG to ease my mind.

I was thinking about seeing an endo also. I'll tell you though, this weakness is shitty. It makes me feel so low and literally makes me feel like I have to slouch, which I know sounds weird. It's just so uncomfortable, and the feeling makes me want to cry from the discomfort. It's like an anxiety itch on the inside when I get this weakness. So hard to explain. When it's in my legs, I feel like they just drag behind me. When it's my arms, they just want to lay limp by my body. I feel like slapping them around telling them to snap out of it. That's the best way I can describe it. The twitches aren't what bother me the most; it's the weakness that brings me down.
 

Nikki J

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Janelle is correct. It was a typo and I fixed it. What you describe is nothing like my experience of clinical weakness. No feeling no discomfort. In fact I keep thinking surely I can do this. Let me try again. Of course I can't but there is always a bit of surprise that I can't. The first time I found I could not stand on my toes I spent a whole weekend trying. Please work with your doctors. And I will trade feeling weak for being one hundred percent unable to do something any day.
 
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Justnme3

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Thank you Janelle and Nikki. 💗

Nikki, I'm so sorry you're going through this. You sound like you are not giving up on doing what you know your body should do. Ugh. What a shitty thing ALS is. And it's "funny" how people just don't think about all of the bad things out there until they start to worry for themselves. Totally normal, but just sad how that is. It's one of those things that makes you want to speak out and raise money for all day long.

Anyway, I appreciate both of your feedback. I hope you are right, and I hope it's just my body showing strange side effects to hormone treatments.

💗💗 many hugs and good thoughts sent to you!
 
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